How are you all doing?
Daisy - I know how you feel. My mind is always racing away and sometimes I imagination takes me to good places and often it takes to bad places but I’m keeping my brain occupied with lots of distractions s much as I can. I hope you can start to feel better soon xx
Vasanthy - How are you feeling on the Xeloda?
Thomaschix - Are you getting on ok with the new chemo drug?
I’ve got my mastectomy date on 4th August. The surgeon said the tumour has fragmented into lots of pieces so the overall size is still the same but there are lots of little pieces left so until they do the pathology they won’t know what the situation is. They are not seeing anything visible in my lymph nodes but again will need to see hat the pathology shows. I’m pretty terrified about that but nothing to be done about it and will no doubt need radiotherapy afterwards.
Hugs to all Tracy
Hows the oral chemo treatment going,? Hope its not to bad for you.
Hope your appt with anaesthetic has gone ok and do u have a date for surgery
Hows are you doing post surgery ?
Vornsta and calied how are you getting on?
Ive not felt to great with increasing tiredness and just short of breath at times. The hot flushes are driving me mad too. Just trying not to get to anxious but im finding it difficult to stop mind from racing in front. I think i will be better when i can drive as it will give me a bit more independence. Really struggling in missing our dog too. She was like my shadow .
I hope the oral chemo doesn’t have too many side effects and that it all goes well.
I will have an anaesthetic assessment tomorrow and surgery is planned for the beginning of August once I’ve spoken to the surgeon.
How is everyone else getting on now? Hope you’re all doing ok xx
hope everyone doing well
Tracy - got your date for surgery?
Daisy- hope you are recovering well from surgery and did you got your plan regarding further treatment.
I have started my oral chemo from today. Taking 1500mg of xeloda twice daily. It’s for 8 cycles ( 2weeks on and 1 week off)
Hope it goes well.
Thank you for the advice about surgery. Strangely I’m keen to get on with it but knowing me I will find it more difficult after it’s done. You’re right... it’s a nightmare trying to buy things that really need to fit properly online. I think I’ll need to order about four sizes to hopefully find something that fits.
I have always suffered from anxiety so I have probably developed lots of coping mechanisms including a lot of distracting myself with constantly reading or arts and crafts when I’m not working. I’m also finding that I am very weepy and down some days and not so bad others and I wouldn’t be surprised if the menopause has an effect on that too.
I have thought a few times during this that I need to speak to a counsellor - I’ve had counselling before for anxiety and stress and it was so helpful just to have someone to talk to who wasn’t connected to you. I totally get how you feel. I’m not used to being an ill person. I’ve always been quite healthy and independent and it doesn’t come naturally to need help.
I have everything crossed for you that the oral chemo will be a lot easier on you than the others were. Sending hugs xxx
Glad you are doing ok and that you have a plan for surgery. The actual surgery i didnt feel was to bad . The worst part for me was the drains. Pain was managable. I stayed in over night.
They will give u a front fasting bra which im still wearing now as its more comfortable than the one i ordered from Asda. It hard at moment due to Covid in going shopping as we normally would.
Ive not been feeling to great in an emotional sense. I have never suffered from Anxiety before but im finding it hard at the moment as i just feel so tired all the time and very weepy . ( Not sure if its the medically induced menopause as well which isnt helping) Also im so nervous about starting the oral chemo after side effects previously. I hate being like this especially in front of my children . I just want to feel like me again .
I have stopped googling and going on any other forums for TNBC as i think im making myself much worse. Any other tips for keeping mind in one piece gratefully received.
You will be fine through surgery and it will soon be another step completed.
Sending virtual hug
Hi Daisy, Hi everyone,
How are you feeling now? It’s been such a tough time but you’re doing so well as are we all. We should all be wearing capes 💪 !!
I’m doing ok this week. I have my pre anaesthetic Assessment on Tuesday and expect my surgery at the beginning of August. I contacted my BCN who gave me some info and put my mind at rest that I would be top priority to get surgery as soon as possible. I was asking her about post surgery bras as I’m finding it very difficult to find anything suitable. If anyone has any recommendations that would be great. The problem I’m having is that mastectomy bras and soft bras don’t come in larger cup sizes 😠
The BCN also said to wear cotton pants or they would make me take them off to go to theatre! Which did make laugh. No lacy underwear allowed.
Hope you are all doing ok xx T
Thank you shi for all the kind words and support. Its much appreciated.
How are you all doing?
Daisy 👭 exactly, if you are given the information you can start to plan how you step through it, you’ve already stepped through treatments brilliantly, don’t forget that 👍 this is just a lap of honour 👍👍to do to give it an extra whammy 👍 you are amazing and stronger than you know you are ❤️ Now please be kind to yourself ❤️ Big hug 💕💕✨✨Shi xx
Thank you so much shi.
Really appreciate your reply . Will contact the nurse to ask about the cape /radiotherapy
Just trying to take one day at a time as i think im getting anxious due to lack of info xxx
Daisy ❤️👭❤️ Please do use the number on here and speak to a nurse, They will be able to help with questions you are wanting to ask with your bcn not supporting you ❤️ Step by step and one day at a time daisy ❤️ Be gentle with yourself you’ve had a lot on ❤️😘💕💕✨✨Shi xx
Daisy- still I don’t have a clear picture. She said it will be for 6-8 cycles . My radiotherapy will be after this chemo. I know how you feel as I am also going through the same. But as per Onco it increases the percentage of non recurrence so I am thinking of going for it. My wish is that the side effects will be less.
Vornsta congrats on finishing your chemo.
Sorry to hear more chemo too. Did the oncologist say how long oral chemo is for? I just wasnt sure if it was before radiotherapy or after ?
So glad to hear that chemo is finished for you. Well done and wishing you well for the radiotherapy.
Glad to hear your scan went well. Have u got date for surgery yet ?
Hows the recovery going and hope the exercise is going ok ?
Hope everyone else is also doing ok sorry if not mentioned you in name.
Ive not posted as not felt to great really struggling with the thought of more chemo . My breast care nurse isnt the most helpful really and doesnt return calls or seem to know about what will happen next. Ive rang oncologist to ask for appt which is on 27th . Just feel like ive been left to get on with it all and im struggling mentally to get my head around it all. Im normally such a positive person but cant seem to pick myself up at the moment. Im still getting discomfort from surgery and some back pain . But if i had a choice i would do surgery anytime instead of the chemo. I know with Tnbc that its the only choice we have but that just scares me silly . Im so scared . Sorry to sound so negative as i really dont want to feel this way. My daughter is due to go to university in sept as i was so hoping to feel better by then.
So sorry to hear your news Daisy and Vasanthy. Rubbish to face more treatment but you can do it 💪
Hope yr scan results are all good Artycart- sounds positive so far.
I finished chemo today and as I had surgery beforehand I have no idea if it has worked or not. Just need to keep the faith that it has worked. Radiotherapy, zoledronic acid and aromatase inhibitors next.
I rang the bell and had my PICC line removed - at the beginning the end felt so far away. Although you may have a little detour on your treatment journey you will get to the end of it, they know what they are doing these oncs.
best wishes to everyone
Hi Vasanthy, I don’t have a date yet for surgery but the doctor who did the ultrasound said things looked good and all she could really see was calcifications which would not have been affected by chemo. I hope to have my surgery very soon though as my surgeon said it would probably be fine in July xx
Daisy and Vasanthy - I’m so sorry that you have both had disappointing news from your pathology results. With TNBC I guess we all have a higher chance of having to have more chemo as there are no other drug treatments available. I’m preparing myself for something similar too. I’ve already been told I will need radiotherapy after surgery.
I am thinking about you all and sending hugs and best wishes xx T
yes I have to have radiotherapy also.
once this oral chemo finished then I have to go for radiotherapy .
As per onco it’s an option for me as we don’t have any other treatment once radiotherapy is over and it increases the percentage of non recurrence She has given me 3 days to think and come back on Monday .
hoping this oral chemo will give less side effects.
I really know how u feel. Just feels never ending. Im Triple negative too.
Do you have to have radiotherapy too ?
Have u started xeloda yet ?
Thinking of you and sending you a virtual hug .
sorry to hear it wasn’t better news. Did they give any indication as to what regime of chemotherapy you might need?
hopefully you can hold in mind that you’ve got through the chemo once and can do it again!!
how are you feeling from the surgery?
hope everyone are ok.
Got my report today. Me also like daisy not happy with that.
They removed 10 lump nodes. Out of that one had a small micrometassis of .5mm and in the tumor there was some residual cancer cells .
as I am TNBC my onco told me that I have to oral chemo upto 6-8. Cycles ( 21 weeks each)
each day I have to take tablet called xeloda. Ah I feel so dejected.
Hope you are all doing well.
Im not feeling to great after pathology results yesterday they feel that i will need more chemo and radiotherapy. Awaiting call from oncologist as not sure yet what plan is all i know is There is one node left that he couldn't get in surgery . He is not sure if cancerous or not. He removed 9 lymph nodes 6,/9 were cancerous .
Im just dreading the thought of more chemo after all the problems that i have had .
I was praying i would just need radiotherapy.
My head is all over the place
Daisy ❤️So sorry to hear your beloved dog has passed away ❤️ They are so much more than pets ❤️ So sorry 😘💕💕Shi xx
I am so sorry to hear about your dog, really sad. I was devastated when my dog died many years ago.
I hope your recovery goes well?
hope yr arm mobility improves. I have heard from several people that doing the exercises is really important for the longer term but it can be tricky to find motivation.
hope you are feeling better after last chemo and good luck for Thursday!
love to everyone else, all ok?
my last chemo is this thurs then radio, got radio consent meeting this tuesday, talking to my plastic surgeon tomorrow- busy week!
all the best,
So sorry to hear about your loss Daisy. She looks like a gorgeous girl.
glad to hear you are feeling ok after surgery. How is your shoulder/arm movement? Mines not great but totally my own fault for not doing my exercises often enough
i have an appointment wednesday to find out about radiotherapy and how it will fit in with other treatment.
hope your results appointment goes well
tracy - how are you feeling from last chemo?
So sorry to hear about your lovely dog passing away. That must have been so hard to deal with along with everything else. Sending hugs xx
Glad to hear that surgery went well and no tumour was seen. Fingers crossed for good news when you get your pathology results next week.
Hope everyone else is doing well xx
Hope you are all doing ok. Not posted for a while as my beloved dog of 11 years has died . We are heartbroken. She has a seizure as i went in for surgery for mastectomy and Axillary node clearance. It was so hard as i didnt know what was happening as i was in hospital. She has been such a wonderful companion
During surgery the anaesthetic broke my front tooth . Surgery gone ok . The drains are where it is painful. So i was glad to have them out on wednesday. He said couldnt see Tumour in breast area but surgery took longer due to lymph nodes matted. The drains were not painful on removal and managing now on paracetamol and ibuprofen. Got pathology results on Wednesday afternoon which im nervous about.
Has anyone started Radiotherapy yet ?
Love and Best wishes to you all
We’ve been allowed to meet up with people outside too and it’s been the best relief from the monotony of being stuck in!!!
I hope they don’t make you shield any longer than the end of the month (they asked me to shield for surgery due to possible risk of coming into a hospital with COVID) but thankfully things getting less restrictive so fingers crossed for us all
ill be on the Kadcyla for 14 x 3 weekly cycles so takes me up to April next year!!!
ill be having one hell of a holiday then!!!!
My unit had just moved back into their proper wards a day before my treatment so things were pretty hectic but I don’t think they have a bell! A bit of a shame so it was all quite low key.
Next for me is lots of scans on 9th July which I’m quite nervous about then surgery asap. Then I’ll be having radiotherapy too. There won’t be any other treatment for me after that as I have Triple Negative.
I hope the Kadcyla doesn’t have side effects like other chemo regimes though and that you can escape from shielding. Do you have to stay on that for a long time? It’s been a long haul already combined with Covid and shielding so I hope your little one can get back to nursery and you to work. I’m hoping that I can escape shielding once my immune system is back to normal as Scotland is shielding until end of July. We are already allowed to meet up with family outside which has been a lovely relief and go out for walks though I’m not able for that just now.
glad you’ve had your last chemo (but boo to the side effects!). What’s the plan for you next? Did you ring the chemo bell at your unit?
im recovering well from surgery although my arm and shoulder are still stiff but I’m a bit naughty with doing my exercises!!!!
plan is for radiotherapy and have a meeting with the radiotherapist next week. Looks like it will be 15 sessions as I can’t have the condensed 5 sessions due to lymph node involvement but that will be confirmed next week I guess
big change is to my ongoing targeted treatment. I was due to continue on herceptin but that’s now being changed to Kadcyla, an “antibody drug conjugate” which is also a chemotherapy drug! Pretty gutted to be back on a chemo regime but needs must. Just hoping that COVID won’t mean I have to continue working from home and keeping little one off nursery past the 16th August when shielding is due to end in Wales!!!!
hope everyone else doing ok xx
I have been thinking about you all and hoping that you are all coping ok xx My last chemo went fine and I am now battling through the horrible side effects but thankfully no temperature this time. I’m as weak as a kitten this week but looking forward to getting on with the next stage of treatment.
Vornsta - Hope your chemo is still going ok and that you will soon be finished. I know what you mean... radiotherapy is a bit scary as it’s new but sure we will take it in our stride as we have with everything else xx
Daisy - Have been thinking about you lots and hope that recovery is going ok after surgery xx
Thomaschix - How are you now? Are you having radiotherapy now that surgery is done?
Vasanthy - Hope you are doing well.
Hi Artycart, good luck for last chemo! Hope it goes well and you can have a cheeky celebration 🎉
I have been having it weekly so not long to go for me with chemo. Then a short break and 3 weeks of radiotherapy which I feel scared about because it is new. I didn’t think I wd be able to manage chemo though so I guess it will be ok.
hope all you post op ladies are doing well?
Well done on your 10th Pacli. Is that given weekly? Not long now till you are finished xx Hope it doesn’t make you feel too bad.
Daisy ~ Hope you’re doing well following your surgery. I’m sure it’s not a walk in the park but I hope you’re coping ok xx
Thomaschix ~ How is recovery going? Do you still have your drain? My sister is a brilliant sewer and she is going to make me a couple of drain bags from the pattern in case I get both done xx
Vasanthy ~ How are you doing now? Hope things are going well.
All prepared mentally and physically for my last chemo tomorrow xx
All the best to everyone on this lovely supportive group xx
Thank you Vasanty. Glad you are feeling ok after surgery. Hope your drain isnt to painful and each day you feel better. Hope the exercises make it easier too .
i am feeling good and managing the pain with paracetamol every 6 hrs. Waiting for this drain to be removed. As shi said eat nicely and keep your strength up. I also had the pain in my shoulder before the surgery as of now I am
not feeling any pain after surgery .
hopefully yours also goes after surgery .
all the best for your surgery and keep up the positive attitude.
Hi Daisy, strangely I had a stiff arm before my surgery that disappeared. Hadn’t even considered that it could have been the lump in my lymph nodes that was causing it but possibly was. Hopefully the surgery will help with the pain.
radiotherapy planning was fine. They just took a position scan and did 3 small tattoo dots so they can line me up in the machine each time. Should get first appointment in about 3 weeks.
I thought it was today your last one. Sorry Tracy my mind all over the place. Good luck for MRI scan.
Hopefully all will soon be a bit easier for us all
I have a week until my last chemo. I’m dreading it but will be so happy to know it’s done. I’ve got an appointment for an MRI scan on 9th July so everything crossed for the results of that xx
Im sure the waiting before the surgery must be tough with the fear of the unknown. I’m sure I will be the same in a few weeks. Sending you lots of hugs for now and for after surgery xx
Thanks Shi for the support. I think its not helping with not having anyone to come with me. Im hoping that the surgery will ease the pain in my chest and under my arm. Not sure yet if it will be day surgery ( they seem to aim for this )
Will do the exercises and take it easy afterwards.
Love Daisy xxx
Daisy ❤️ You will be 👍 try to eat to keep strength up 👍 just take it steady after op, let everything knit back together gently, do your exercises, step by step you will be 👍💕💕✨✨Shi xx
How did your last Chemo go ? Xxxx
Vasanthy and Thomaschix
How are you both feeling?
How did your radiotherapy meeting go ?
Im getting a bit nervous now for surgery . Trying to keep focused. Just completely lost my appetite too.
Sending everyone lots of love
daisy- yes my surgery went well. Still have the effects of anesthesia and staying overnight as physiotherapist will be visiting to teach the exercise by today only and probably will get discharged by evening. As of now not that much pain due to paracetamol . All the best for your surgery on 23rd. My radiation will be decided after the pathology report.
Tracy- one more to go yaay. Then you can relax a bit.
caed- Hopefully mine will
be derided after the pathology report only. Waiting eagerly to finish everything. All the best for your radiation to go well.
Thomaschix- happy to hear you are doing well after surgery.
Thank you Daisy, yes I had surgery first. In December. Wasn’t the initial plan of action. If Her2 positive they said It would be chemo first. However they couldn’t get the Her2 result from biopsy so decided to go ahead with surgery first. The tumour was small so I guess easy to get clear margins. Well that’s how I understand it. As it was Her2+ I have a year of antibody treatment which still means going in every 3 weeks for a drip. Only takes about an hour. I’ve had 4 already alongside chemo. Not sure of final dates. I’ve also got to start on the tamoxifen in the next couple of weeks. Fingers crossed I won’t have to shield for much longer but who knows. I’ve been ok staying in but as lockdown is changing Will be hard if I have to miss out on family getting together.
Hope your dog makes a speedy recovery.
Wishing you well for your radiotherapy meeting on Friday. Hopefully Nearly all will soon be done for you. Am i right in thinking that you had surgery first ? Its been a long few months especially with the Covid situation..
My dog hasnt been very well this evening so currently camping overnight on the sofa to keep my eye on her.
Hows the sheilding going ?
Love Daisy xxx
Hi Daisy, I have my radiotherapy planning meeting on Friday. Will be a week since last chemo. Will find out then when it is due to start. Oncologist said it would be around 3-4 weeks.